"ATTEMPTS TO FEED" PHOTOS

THOUGHTS FROM MAX

After that weird study Mom and the doctors made me do the other day (did you see the photo of me with that white stuff all over my face...barium, yuck!), I have not been very interested in tasting anything but we do keep trying. Several times a day Mom has that spoon in front of me and she thinks if she smiles a lot and makes funny faces that I will think this is great fun...she's not fooling me! I am keeping my mouth closed! No more barium!

Maybe I will ease up in a few days and let her back in, but we'll see! For now, I'll keep making her work hard! :)

Check out how cute I am in my latest photos...yep, that's me, more and more handsome every day!

Love to all, MIGHTY MAX

I am wearing a bib for the very first time. Mom was soooo excited! :)

My OT lent us this funny lil' chair to provide me the "ultimate position" for feeding. My house is getting quite filled up with all these therapy gadgets, but heck whatever works, we'll try it!

DIVORCE UPDATE

Thanks everyone for your continued support on this very painful and frustrating issue.

Today I am having to work on some divorce matters and I thought it was about time I brought you up to date. Many of you have emailed me asking what is going on with the divorce, when will it finally be over, is he being agreeable, etc. I have hesitated on posting anything lately to avoid the "not so sweet" emails afterwards from my soon to be ex. (He says the blog should be called "bashvicupdate.com" which many of my friends said they would love to put together!!! Boy would that be an interesting website!!!)

Unfortunately he doesn't understand the impact of his actions on Maxwell and how relevant it is to our daily life. The more stress he brings to my life and the more financial struggle we endure, the less I can fully give to Maxwell emotionally, physically and financially. And I don't want anything to impact him negatively and I will fight tooth and nail to get what we deserve so that Max has the very best chances for a good and happy life.

Anyway, all I care about at this point is getting a fair distribution of our assets and equal financial support since I cannot work due to Max's health and development. Fortunately he is paying what the court is ordering him to pay at this point (not a fair division but at least it is something), but there is much more to be discussed. He has no concept of what is needed in Max's life, but hopefully he will see the light someday. I keep encouraging him to get involved and learn more about CHARGE, his care, etc. but recently I have begun to give up that effort because it was proving to be fruitless.

What is frustrating in the divorce is that I built my businesses (we own 8 Curves together back in WV/PA) and now he is getting 50/50 of them. In WV law, it supposedly doesn't matter if someone caused the divorce (adultery, etc.), it still is 50/50 distribution. Then he bought five additional businesses while Max was in the hospital undergoing numerous surgeries. Unbelievable, right? I know. So while I will be staying at home with Max for years to come (and living on limited alimony/child support), my soon to be ex will be advancing his career, building business equity and increasing his wealth. Understand the frustration?

I would LOVE to be working...I absolutely loved my career and miss it tremendously! But I know that Max's health and development is the #1 priority...I wish others felt the same!

So I guess the next step is our "status conference" in a few weeks and then hopefully the final hearing will be in April. I was hoping to settle out of court. Unfortunately we have been unable to come to a resolution, which means I have to travel back to WV for the hearing leaving Maxwell behind (he is not stable enough to travel). I am not happy about that at all. I have no idea how I am going to do that...or how he will be cared for...most likely we will have to hire nurses to be with him 24/7.

It is ridiculous how long this has been going on. I was so hoping we could come to an agreement so this could be over once and for all and I wouldn't have to leave Maxwell for even a minute. My heart just breaks thinking about it!

I decided during this time to also change legal representation and am feeling very hopeful about their abilities, but of course that has required extra time and money to catch them up to speed.

It is so absolutely frustrating it is to be dealing with all of that while trying to celebrate Max's progress in so many areas these past few weeks. But I guess we gotta do what we gotta do!!!

Anyway I best run to work a little more on these divorce issues...and then when Max wakes back up, we need to make our nearly daily run to the drug store for prescriptions! And then back home for lots of therapy and hopefully baby food tasting!

WOO HOO!!! MAX PASSES TEST!

Yesterday we drove to Children's for a swallow study by a speech pathologist. And drum roll please....HE PASSED!!!

Ok, it was by no means perfect...far from it. But he is showing that he can swallow (AWESOME!), it just requires a lot of work and time. Because he has not fed by mouth before, he is very, very uncoordinated with his swallow but it does eventually happen.

They want me to move forward with what I am doing (yay for mommy's instinct!!!) and really put a lot of emphasis on trying all different kinds of textures and tastes many times a day. We still are only going to do small amounts but working up to bigger amounts (like half a baby spoonful), knowing that at times he may aspirate a little. But she said to make progress we have to take this chance. I am going to run this by the pulmonogist just to make certain though...we must protect those fragile lungs!

How exciting is this!?! I am sooo happy, but I'll admit that I am a bit nervous to move ahead because I don't want him to have any respiratory setbacks. But heck, we are making great progress!

And this morning I pulled out a bin of all of his baby bibs...we finally get to try and use some!!! WOO HOO!!! :) I had put them all away because I would get so sad seeing them in his closet...we had no idea if he would ever be able to eat by mouth.

Here are two fun photos!

The speech pathologist and I were talking beforehand about our love of scrapbooking. So before we started the study, she said wait, let's take a photo of this...it would make a great scrapbook page! How thoughtful!

See him in the little chair? He's looking all around saying, what the heck am I doing here? The machine on the right is what monitored his every move during the study. We could see each and every muscle, bone and movement...it was fascinating!!!

And no that is not a funky dress I am wearing, it is a protection gown from the xray machine...felt like old times when I wore one practically every day in the hospital with all of Max's tests!

This is "post study" with the infamous barium ALL over his face! What a sight!!! They kept telling me to give him more and more and he wasn't used to having that much in his mouth so he kept drooling! I was probably more nervous than he was!

PHOTOS, PHOTOS, PHOTOS!!!

I have got a million and one things to do today, but I can't help but distract myself for a few moments and post some adorable photos of Maxwell. Bragging about him is definitely addicitive!!! :)

Yep, there's my man...looking sooo handsome!!! And what is super fun is that this outfit is a hand me down from Jackson to Thomas to Maxwell and it was an original gift from me to Jackson!!! So of course there is a doggy on it!

And here he is enjoying his mouth! YAY! He is getting better and better every day with his binky. With his VERY high palate and weak suck, he can't yet hold it in there for very long but he is making progress!

Max is just starting to giggle...and it is the best sound in the world! (Sounds more like a snort, but to me it is absolutely precious!) Here Jackson was forcing his fish to go around faster and Maxwell starting laughing and laughing. It was sooo great! They both were having so much fun!

Max has decided my hair is absolutely delicious. Here he completely entangled himself with it and was absolutely delighted.

And oh yes, my face is very fun to explore too!

Actually earlier this week he did so much "exploring" that he gave me a bloody nose! He stuck his finger WAY up my nose and before I could stop him, he started exploring even more! Sure enough...a bloody nose.

Perhaps it was pay back for all the suctioning or for the bloody nose he got last week! He was doing therapy with his PT and when she was practicing rolling over with him (he doesn't do that himself yet...but oh so close!) he bonked his nose. He definitely let us know about it! It was so sad! Ok Max, we're even!

This is Max's "look" right before he loses it! He can only stand tummy time for very brief moments. Each time I set a goal for him (ok Max, lift your head three times)...but once I see this red and frustrated face, I know the end is near!

Here is Mighty Max doing some therapy with Eileen, his Occupational Therapist, with the local neurodevelopmental clinic. She is so good with him! We are blessed to be in an area with such expertise!

SWALLOW STUDY TODAY!!!

I have been trying to coordinate all the different therapists and doctors this week to decide what to do about the swallow study and last night we got a "go ahead." And perfect timing! They had a cancellation for today so we are heading to Seattle in just a little bit!

I am so excited, but nervous too. Yesterday the OT was encouraged that Maxwell was so interested in the tasting of baby food (he was smiling the whole time!), but she also thought his swallow sounded very deliberate and long as though he is having a difficult time. Additionally his O2 needs increased yesterday, which may/may not be a total coincidence.

Today's test is very important and hopefully we get some good news!